Emotions

The accounts that people gave about being a grandparent of someone with autism were often full of emotion. They described feeling deep sadness about some aspects of the lives of their children or grandchildren, but they also spoke about the sense of joy they felt when their grandchildren achieved particular milestones. Most felt a strong sense of pride about their children and their families. In addition, they worried that their grandchildren could experience difficulties in the future and that their children would have to take on additional responsibilities over the course of their lives.

“When he achieves something new, it really moves me”
Reflecting on their experiences, a few grandparents remarked on how they’d changed the way they felt about their grandchildren and their achievements. They took real pleasure in seeing their grandchildren achieve what they might previously have thought of as small milestones, such as waving or saying a word. They’d learnt to see the joy in small things. As one couple said; “You have to find new ways of celebrating and having a relationship”. People had grown to feel this way and saw it as part of a learning process for them as they adjusted their expectations. As one grandmother said, “In the beginning it was very different but now, he is just special”.

Bryan and Moira are both retired. He is a former naval officer whilst Moira used to work part-time as a shop assistant. They have two children and three grandchildren. Ethnicity/nationality: White British.

Bryan'Well I was just going to say that. In a curious, in a curious way, as we have grown to accept [Grandson] for what he is and so on, we’re less and less inclined to wish for a magic bullet you know. More and more content with the way he really is. I wish it weren’t so painful for him.

Moira'If we could find ways to make it easier for him or to be sure that he was happier in what he can do and can’t do. If somebody could certainly find, not a job, because I don’t think he’d ever hold down a job, but something that he can do that he’d get satisfaction from, it would be nice.

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Age at interview:

63

Sex:

Female

Background:

Interview 7 is married and has two children.

An example of how she teaches him to do things which do not come to him naturally; he will rarely come and give somebody a hug spontaneously, but if you’re sitting on the settee, he likes to come and stand behind you on the settee and then he will wrap his arms around you from the back. Because it reminds him of a game we used to play with him, but he does like the physical contact, which is very strange according to what they say about autistic children. But he will give you a really good hug from the back, and he really loves that. And he likes it if you hug him, in the middle of a game. If it’s playful then he will be okay and he will love it. And he likes it when his mum hugs him too. But for him to go up to somebody and spontaneously give them a hug was difficult.

As he started to show an interest in cuddly toys recently. So they have bought him a very large rabbit, because he likes rabbits. They started role playing with this rabbit by hugging the rabbit, and a bit later he did give the rabbit a big hug, and then he went up to [name], my daughter’s partner, and gave him a big hug. So that was very moving.

So what I’ve found is that, in spite of all the sadness and the frustrations you experience, is that you receive fantastic gifts. When he says something every four months, the happiness you feel then is just incredible. When he achieves something new, it really moves me, because it is so small, it is so incredibly small and it is so important.

“It’s hard to deal with sometimes”

One grandmother described her experiences “as a rollercoaster; terrible downs and then quite a lot of highs really”' most grandparents talked about feeling sad about some aspects of their children’s or grandchildren’s lives. Several felt sad that their children’s families were unable to lead spontaneous and ‘normal’ lives, doing the things that other families can do such as day trips; going on holiday as a family; having a birthday party; going out for a meal or going to family get-togethers (see ‘Going out’). One couple felt sad that their grandson was missing from a framed family portrait as this reminded them of the life he led away from them in a residential school. These constraints could make the grandparents feel that their children and grandchildren were “separated” from the wider family and this was hard, particularly when they reflected back on their own childhood experiences.

Jan has one daughter. She also has three grandchildren; one granddaughter and twin grandsons aged ten and eight respectively. She has retired from her job in social services management. Ethnicity/nationality: White British

But you know, the biggest problem that we have with them in terms of going anywhere is like in this room, which is full of all my bits and bobs, and I suppose is one of my big sadnesses, is they don’t come here, because we couldn’t manage them in here.

In this room?

No.

Right.

Because everything would, everything would just go. We might manage one for half an hour with two of us here and the garden door open. And we might manage one in the kitchen. But otherwise I’d have to clear the decks really. I mean like you do for a two year old, but of course now they’re much bigger, so you wouldn’t be able to do it in a way that you would and make it satisfactory, and you know, if I lived in a house that had a separate dining room, you know, I could keep a room that I could have them in really.

So I haven’t had them here... for a long time now. But they were having some work done in the house and they did come in the garden I think one day in the summer for a little while. And... I think what is also sad about that is that it means that as a family they never come here for a meal. And I do find that quite difficult because that feels to me what families do.

And it’s the same issue in terms of like going out for Sunday lunch which is something we used to do when they were smaller, but we actually don’t do that now. And what we did, what we’ve done for two Christmas’s is one of the direct payment helpers has come one day before Christmas on a Sunday and she’s stayed with the boys and then the rest of us have gone out for a Sunday lunch, well for a Christmas dinner really.

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Age at interview:

61

Sex:

Female

Background:

Irene lives with her husband. They have three children and two grandchildren. She is a retired teacher. Ethnicity/nationality: White British.

You do your best, but you often feel quite, you know, you see other people saying, “Oh let’s just pack a picnic and go off to the seaside for the day, shall we?” And you know that’s never going to be part of your experience as a grandparent or as a parent. And seeing that my daughter, a lot of weekends, they don’t have real family time, because one of them has to do some with one of them and one of them has to do something...it’s rare. So they don’t often…Obviously they share with each other all the delights of the events that they’ve done with the individual children but they’re not there doing it together.

A couple of grandparents said that they had felt anger in the past towards their grandsons when they became aggressive and hurt their parents. Over time, they developed a better understanding of why their grandson behaved like that.

Brian and Lucy are both retired. He is a former police staff driver and she a former dinner lady. They have two children and three grandchildren with a fourth on the way. Ethnicity/nationality: White British.

Lucy' Well I suppose, no, I was going to say I suspect we used to get, we probably would have got angry with [name], but I don’t think so, because we knew he, he couldn’t stop himself from doing it. It wasn’t a deliberate, I kind of, I assumed it was just his way, just his way of telling her to stop doing it. Whatever it was she was doing. Whereas I say other children would just say wouldn’t they, “Don’t want my coat on.” “I don’t want my nappy changed.” And because he hadn’t got the words, he did it with his mouth and he used to scratch as well didn’t he? We worried for her.

Brian' Oh yeah.

Lucy' We really did.

Brian' As he was getting bigger and stronger.

Lucy' Yes.

Brian' We did worry about her.

Lucy' Yes, yes. It was... there again it seemed to be something we couldn’t do anything about so… so frustrating.

Some grandparents talked about the sadness they felt for their children in terms of the “lifelong responsibility” they faced caring for their children. Some felt concerned that the experience had had a significant impact on their children (see ‘Thinking about the future’). A couple of the grandchildren lived in residential schools and the decision to take this move, and the context behind it, was very upsetting for the family members.

Jan, a social care trainer and consultant, has two children and two grandsons aged 10 and 5. She lives with her husband. Ethnicity/nationality: White British.

And at that point my mum was still alive as well, and I was actually really worried about the effect on them. Sort of, you know, that they had gone through a life where they’d had a disabled son, and there really weren’t any disabled rights in those days. I mean they really had to push for everything that they go and now they were going to have to see their precious granddaughter going through the same thing.

But as it turns out, I think we all had our concerns about [grandson] in a different way, but we weren’t talking to each other and once we sort of all acknowledged well they are concerns and we’re going to have a diagnosis, my mum for instance, said, “Oh I’m so glad, because I have been worried about how he’s developing and his communication. I’m so glad you’re doing something about it.” We were all trying to protect each other I think, but it would have been much easier if we’d been a bit more open about it, but I did find it difficult, because when my broth… when I was growing up with my brother, as I say he was in a residential boarding school and he went on to residential care. He came to live in the community in his own flat in later years. But at that time that wasn’t an option, and so there were lots of other residents who had so called autism diagnosis even then. And I didn’t really know much about it, so, I suppose in some ways, I was a little bit scared as to what this diagnosis meant for my grandson.

I certainly know a lot more about it now, as I think society does generally. But I think if I’m honest, I have to say it hasn’t been nearly as awful as I probably first thought when he was first diagnosed, because he is, he’s doing so well. I’m so proud of the way my daughter and son-in-law, have you know, managed his behaviour and kind of have brought him up.

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Age at interview:

56

Sex:

Female

Background:

Brenda has two daughters, two stepsons and four grandchildren. She lives with her partner and is a Student Services Team Leader. Ethnicity/nationality: White British.

So how does it make you feel to know that your daughter is living with this?

It’s upsetting because you know, nobody wants to see your own child, you know, upset, and there’s odd times when I phone and I can tell by her voice if she’s up or she’s down. And also I suppose living with her MS is worrying, because you don’t know in the next ten years what her state will be, and also that [name] will still be reliant on her, because he’s only being to be 16, 17 then. So, I suppose you worry about what the future holds for her and for him, and I don’t like to see my children upset which is why I try to give as much support as I can, and you know, offload sometimes and take him off with me, and spend time with him, so it gives her a break.

“You feel rejected, but then you know you’re not being rejected”
Some grandparents talked about their grandchildren’s lack of physical contact (see ‘Relationship with grandchildren’) and how this could be upsetting. They got used to it but said that “it was hard” that their grandchildren didn't want to be hugged or kissed. They also found it sad that their grandchildren were unable to express themselves, or that if they hurt themselves they were, at times, unable to console them.

Janet is married and is a retired waitress. She has several grandchildren. Ethnic background/nationality: white British.

My granddaughter finds affection difficult, even with her Mum. More so with her Mum than her Dad - she’s quite affectionate towards Daddy. They seem to have a special bond those two, and my grandson, he’s more for his Mum. They’ve sort of paired off one, one to each parent and but [grandson’s name] is, sorry, my grandson is affectionate towards his daddy as well, but the little girl’s a different case altogether. If it’s her idea, if she comes and sits on your lap, you can, and she’ll get your hand and put it round her, and have a little cuddle. But when we’re leaving, if we’ve been in their house and we’re leaving to come home, my husband sort of, “Come and give Grandpa a hug and a kiss and Nana.” My grandson will, but the little one doesn’t, doesn’t like kisses any more she’d rather do a high five. So, that was my husband’s idea, “Oh well if you don’t want to kiss Grandpa, gives us a high five then.” And he puts his hand up and she [claps] does that now, and that’s quite good.

But she can be. But when, I find that a bit upsetting as well, when she, if she hurts herself they find it, autistic children find it really hard to express pain. We’ve seen them have some really terrible spills that would have left regular kids absolutely sobbing. And they really hold it in and find it hard to display emotion, their reaction to pain. So when the little girl hurts herself you just want to pick her up and give her a hug. And her hand goes off like this, and you’re held off at arms length sort of thing. But, that’s hard to deal with sometimes.

A few grandparents described being philosophical about the situation; they felt there was nothing they could do about it, so they “just had to get on with it”. One couple said that they accepted they would not be part of their grandson’s life in the way they had anticipated, which was hard as he was their only grandson. Some also felt that they couldn’t appear to be too upset or negative about things because that would have an impact upon their children.

Many grandparents thought about the future and worried that their grandchildren may lead difficult lives (see ‘Thinking ahead’). Some were concerned about a possible genetic link to autism (see ‘Feelings about diagnosis’). One grandmother was upset because she’d realised, in hindsight, that her son was also on the spectrum but he had remained undiagnosed through a difficult childhood. She felt that she had failed him, even though he “got there in the end”.

A few said that they felt sad when they thought that their grandchildren weren't accepted by other children, even if they didn’t know if their grandchildren themselves felt sad about these things.

Dorothy is a retired teacher. She lives quite close to her daughter and two grandchildren. Ethnicity/nationality: White British.

There is a place where they can go in the secondary school, which is good. There is a games club every dinner hour and some of the more geeky children do go to it, and the children who can’t bear the playground. But Edward loves the playground. He likes. He loves football. He’s very sporty, he’s good at sport. He wants to be there. He wants to be part of things. He wants to be in with the other boys, but they don’t always want him. He in fact told us, that they were asked when they left their primary school how people would remember them there, and he said, “They’ll remember that I was weird”, which is sad really.

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Age at interview:

56

Sex:

Female

Background:

Brenda has two daughters, two stepsons and four grandchildren. She lives with her partner and is a Student Services Team Leader. Ethnicity/nationality: White British.

What would you say your main worries are for your grandson?

The other children not liking him. That hurts me. You know, when I’ve read little bits about how he will sit on own, and if children get to realise what he’s like that he could lash out at them. I don’t like the thought of him being an outcast. I want him to be accepted and be just the same as, you know, them. So that worries me. But I worry sometimes about what’s in his head. What he’s thinking when he… you know, or does he really understand when he’s having one of these temper tantrums. When you talk to him, just as a person, if he comes into the room now, he would be very precise with you. So he would hold a conversation, but I suppose you do worry. You know, I worry when he’s not with me and I think, well what’s he thinking, but then I suppose I have so much contact why I have to phone and just have a little conversation. Just to let him know that you know, tell him I love all the time. He’s always told he’s loved.

“Our extended family has tried to understand, but...”

Some grandparents looked at more distant members of their families and felt upset that they didn't seem to understand what everyday life was like for their grandchildren with autism. They felt that some relatives could, unintentionally, be hurtful in what they said and remained largely untouched by the experiences. In addition, some talked about how their other children felt left out in terms of time and attention they were able to give them because they devoted more time to their grandchildren with ASD.

Irene lives with her husband. They have three children and two grandchildren. She is a retired teacher. Ethnicity/nationality: White British.

But it’s very, very hard if you’re a grandparent where you’ve got one family where the children haven’t got any kinds of difficulties and another one that has. And you know that you’re a main support source for that family, then suddenly getting it in the neck out of nowhere from another own child of yours saying, “Oh it’s all right because they’ve got difficulties. You’re not there for me. I could do with a bit of help sometimes, but do I figure in it.” You know, and they come out with these things.

And then you know you feel consumed with guilt and you think, “Well I’m sure I have helped them. I’m sure that I’ve tried to balance it all out”. But sometimes how it’s perceived isn’t how you might come across. Do you know what I mean? That’s incredibly difficult. And when they share stories like that I feel really sorry, you know, and sometimes it takes another mum in our generation of mums to understand where that other grandmother, a mother in this situation is coming from.

One grandchild had an aunt who lived abroad and who found it difficult to get to know her nephew because he couldn’t communicate using Skype or telephone. Hearing about their friends’ grandchildren could be a source of sadness for some of the grandparents who said that it was hard to compare the different achievements of the children. This, again, was linked to worries and concerns about the future.